Friday, February 13, 2015

I love a tubie!

In honor of feeding tube awareness week...

I love a tubie
 First off I want to say that getting a tube placed in our son was scary but it was the best thing we ever did.

Our son never learned how to suck, swallow, and breathe. He threw up after every feeding. He was on oxygen 24/7 and would get formula in his tubing.He was sent home from the hospital with an NG tube (up his nose and into the stomach) which I was taught how to change out every 3 days. It needed to be switched from right to left as to not cause irritation in his nose. He was being fed be gravity so we had big syringes that we would put the food in and let gravity do the work. We could control how fast it went in by holding the syringe higher or lower.

It would take him an hour to eat. Another hour for him to possibly throw up, aspirate and turn blue. Then I would have to suction him out to get him back to normal color. We took an hour break and start all over again with the next feeding. We did this around the clock. We had rubber-bands strung up every where so I could hold him and sit up anywhere in the house and my arms wouldn't get sore. To say it was exhausting would be an understatement. It was hell. I didn't leave the house for 2 weeks straight, not even to step outside and breathe fresh air. I had a mental break and told my hubby that we had to take him back and give him up for adoption. I couldn't do it any more.

He ended up getting really sick with aspirated pneumonia and had to be admitted into the hospital. I felt like the worst parent. The "If I had only..." took over my thoughts. That is when we decided to have a surgery done to twist his stomach and put in a g-tube. Wikipedia does a great job of explaining the stomach twisting! Find the explanation of the procedure by clicking HERE. We didn't want to do the surgery while in the NICU because we wanted him to be home, and it was so... Permanent. We wanted to see if he could do things on his own. I thought I was SUPER MOM and thought I could help him learn. I was so wrong. This was not something I could "teach" him.

The procedure went well. He healed quickly. And our house got turned into a hospital. We came home with an IV pole instead of rubber-bands, a pump that would control the speed of the feeding, all kinds of measuring cups that were smaller and more accurate then what you find in the store, and a little man that didn't throw up any more!

Dealing with the medical supply companies has not been easy. It seems the bigger they are the crappier their customer service is, but it is worth it. Our little man is doing better then ever. He still gags when he is too full but he hasn't had aspirated pneumonia in a very long time. The best part is, now that he is bigger and stronger, we are working on getting rid of the tube! It is a long process that we have been working on for a couple months now. He is taking great strides and we hope to have it removed within the next year!

I am so thankful that we had the g-tube put in! We are all getting more sleep. Our little man is growing. He is healthier now then he has ever been. If you are facing the decision to put one in or not I say DO IT! It is well worth your time and effort. 

2 comments :

  1. It is really a ture blessing how modren medicine can help improve quality of life! So glad to hear your little guy is getting stronger every day

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  2. I've worked with a couple of people - feeding tubes not only changed their lives but saved their lives. Great post. I had no idea there was an "awareness month," for this.

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